What do you do while you're in medical limbo?
August 16, 2017 3:49 AM   Subscribe

About 6 weeks ago I started feeling inexplicably tired and dizzy, then gradually started having other symptoms. I've only missed a few days of work in total but it's draining my ability to do much else, and I don't know what's wrong with me. I've got another doctor's appointment in a few days but I think they're probably going to send me for more tests which could take a while. What do I do in the meantime?

For the purpose of providing some background, I'll give a (relatively) brief rundown of my personal health woes. A few weeks ago I just woke up really tired one day despite sleeping fairly well. I thought I might be coming down with a bug, but over the next few days I had no obvious cold or flu symptoms. I kept feeling tired though, and after a week or so I started feeling dizzy and faint and getting headaches. I was having tinnitus and a bad taste in my mouth as well, so reluctantly I went to the doctor who gave me antibiotics (he took me at my word when I said I thought it was a sinus thing) and said to come back if it didn't get better. It didn't, but before I was able to go to my next appointment I started feeling short of breath and having chest tightness. I made an emergency appointment, and the doctor I saw referred me to the hospital that day to get checked out, presumably since she didn't want to take any chances with chest pain. All the tests were fine (ECG, chest x-ray, standard blood tests which included haemoglobin, kidney and liver function, and a couple of extra ones but I don't know the details). I spoke to a doctor at my GP surgery after that who said to rest for a few days and make another appointment if I wasn't feeling better or was getting worse. The headaches and the chest tightness etc seem to have stopped fairly abruptly (strange, but I'll take it!), but I've had tingling and numbness in my hands and feet for a few weeks now, and it's getting worse which is really worrying me. Plus I still tire easily and can't walk very fast which makes it hard to do much of my usual activities. I'm going back to the doctor on Monday but I'm fed up having no idea what's wrong, and realistically I'm probably not going to find out at my next appointment.

It's not just the frustration of feeling unwell and not knowing what's causing it, but that I'm starting to doubt myself ('Maybe I've just gone nuts and I'm actually fine and I'm just imagining all these symptoms...'), and the worry that I might start to feel better but I'll never know what caused it, and I'll always be worried about getting sick again. Or I might just have this sort of amorphous blob of symptoms for the rest of my life and never get a diagnosis! I know that in the grand scheme of things it's only been a few weeks and worrying this much isn't helping but I don't know what to do with myself. This seems like the kind of thing that there should be self help booklets for. How do people deal with the uncertainty of having something wrong with you but not knowing what?
posted by anonymous to Health & Fitness (7 answers total) 5 users marked this as a favorite
First of all remember that 80% of all medical complaints get better without any medical treatment, and of the remaining 20% the vast majority of them get better with some treatment or turn out to be chronic but not hugely serious in the long run. For example, 90% or so of adults eventually wind up with arthritis and keep it at bay with over the counter medicine for many years, and that could be the tingling issue.

Second, consider that the difficulty in diagnosis indicates two things: It's not something obviously critical that they are familiar with such as a heart attack, or a skull fracture etc. etc. or they would have recognized it immediately, and that it is very likely therefore more than one thing happening at once making diagnosis more difficult. You are likely exhibiting symptoms of two things going on at once, making your rule them both out on the grounds that you have symptoms that contra-indicate both of them. For example you could be suffering bad effects from summer humidity - dizzy, faint, headaches AND anxiety attacks. Anxiety attacks don't cause headaches so obviously you ruled that out, and humidity doesn't cause shortness of breath, so you ruled that out, and now you are also having a slight reaction to antibiotics on top of the humidity related problems and the anxiety attacks and you are feeling an ongoing wretchedness that is extremely miserable.

So you can try to tease your symptoms apart and see if any of them might be caused by minor secondary issues that you can address, or test. For example my suggestion of humidity being an issue can be tested the next time the weather is muggy by going in an out of a well air conditioned environment - three hours in and three hours out. If your symptoms go up and down with your time in and out you know they are affected by humidity and you have done an inexpensive diagnostic. (I recommend a library as a testing location, as it is a low stress location where it is easy to kill three hours in an enjoyable way.)

If you do not practice mindfulness now is the time to do so, or learn to do so. Rather than focusing on what you feel, focus on the areas of your body that do not hurt, or do not feel sick. Many people are afraid of practicing mindfulness because they are afraid they will be more aware of pain or bad sensations, or bad thoughts, so start by focusing on those parts of the body or sensations that are aware of things that are outside of the bad thoughts. For example if you have a headache begin by being aware of all your body sensations except for your head and gradually work up to the very edge of the headache until you can be aware of the head pain without being panicked, if that is a problem for you.

Next of all, since there is a distant, highly unlikely, panic scenario, catastrophizing scenario that you are about to embark on an acute illness, begin an easy, self cherishing health program. Begin with slow or motionless range of motion exercises to the music you love best, periodic fluid intake of fluids that you are eager to drink (apricot nectar?), walking under tall green trees and breath fresh air untainted by car exhaust, incorporating an exercise program with social time and other similar new initiatives. This is a time to cherish yourself and provide yourself with morale support, so find some ways to do this. If you have any spiritual anchors re-connect to them. You want to be able to smile like the Buddha, to feel like you are in the hands of Jesus, to dance like Kali, and to be open to the wisdom of Odin who hung on the tree for nine windy days and nights and received the wisdom of the runes - so whatever your spiritual roots, it's a good time to look for those, or experiment with those. Don't forget humour. Humour is a very spiritual practice.
posted by Jane the Brown at 4:36 AM on August 16, 2017 [7 favorites]

I really feel for you. It's awful to feel ill but not to know why!

I think you should consider talking to a therapist or other professional. NOT because I think this is all in your head, but because you need help dealing with the uncertainty and scary possibilities. There's no shame in that.
posted by schroedingersgirl at 6:09 AM on August 16, 2017 [1 favorite]

What Jane the Brown says. I have recently been through something a little like this. In my case the problem was obvious, but it took awhile to figure out what to do about it and I will probably never know why it happened. But the experience of having to live with unfamiliar physical feelings plus uncertainty and fear was very much the same. The one thing I would add is that if you feel you need to tell the story of what's happening a lot that's probably okay. I don't mean obsessively worrying about what ifs. But recounting to yourself or others 'first this happened, then that, and now I...' is one of the ways to take ownership of your own experience.
posted by ALeaflikeStructure at 6:32 AM on August 16, 2017

As a person who very recently went through this you have my deep sympathies. I ended up having a atypical seizure condition, likely due to a history of concussions (thanks unremarkable HS/College sports career). But by the time I got there I was kind of a wreck, I had had a million scans, two biopsies, ekgs, a holter cardiac monitor and eeg monitor, some ultrasounds and bloodtests.

By the time I finally got diagnosed I was relieved to not have cancer or a tumor or any of the other much scarier things, but I was also really shaken up. My condition will be treatable with meds, which I'm in the multi-month process of dialing in, but once figured out I'll be on those forever.

Things I wished I did differently: Talked to someone probably a therapist about it. I kept most this to myself, which didn't help. Talked to my doctor about how my anxiety about this condition/treatment/diagnosis was interfering with my life. Eventually I had enough of a panic attack to be handed some Xanax and JESUS IN A BASKET that would have been helpful months ago. How I wish I'd spoken up sooner.

Basically I regret not taking care of the symptoms/problems I did understand, my insomnia, my anxiety etc while waiting to discover what was wrong. Those problems were as real and treatable as the damn seizures, but I was so focused on the end goal that I ignored my body in the meantime.

Good luck, and be kind to yourself.
posted by French Fry at 6:32 AM on August 16, 2017 [2 favorites]

If you're not ready to see a therapist, you could tell your doctor during your next appointment that you are a complete wreck and ask for something like Ativan. An SSRI like Zoloft is going to take a month or so to start working, and hopefully you won't even need it by then because your tests will be back and things will be better defined.

But it's perfectly appropriate to tell your doctor that you're being driven insane by all this. (I would be too (and have been)).
posted by DMelanogaster at 6:38 AM on August 16, 2017 [2 favorites]

IANAD and I am definitely NOT saying that your condition is autoimmune-related, but your experience reminds me of what I went through when I was first dealing with my autoimmune condition -- weeks stretching into months with weird symptoms, inconclusive test results, docs not knowing (or suspecting the wrong ailment and sending me on a well-meaning wild goose chase). The doubt and uncertainty is frustrating and you just want to KNOW already! As you said, you aren't likely to get a diagnosis at your next appointment, and you may not for months, or years, or at all. So how to deal with the uncertainty?

1. Take control where you can. If you're not already, start keeping a journal of your symptoms, your diet, your activity, your sleep, your cycle (if applicable). On paper or in your phone, but somewhere where you can access it to discuss with your doctors along the way. You'll start to learn things about your body, and you or the doctor may start to see patterns/trends in the data that weren't clear before.

2. Find support. You're already doing that by asking this question. And as I said, your experience sounds similar to lots of autoimmune sufferers -- we call ourselves "spoonies" and regardless of the particular ailment (or no actual diagnosis yet), we support each other through the uncertainty and frustration. You can find groups on facebook, or twitter, or message boards, that will give you a forum in which to vent your frustration to people who have been there.

3. Trust yourself. Be your own best advocate. The "Am I crazy? Is this all in my head?" feelings are absolutely normal, but not productive. Accept them for what they are (a normal reaction to medical limbo) and then put them aside. Your symptoms are real even if they are hard to pin down (and you know this because you're journaling everything!). If you have doctors who believe your symptoms are real (even if they can't yet determine the cause), then you are very fortunate - stick with them. If your doctors try to dismiss your symptoms or tell you you're imagining this, especially after you start tracking your symptoms, then it's time to find other doctors.

4.Stay focused on the right goals. As you're on this journey, remind yourself that the overall goal is to feel better. You might get to a point where -- through some combination of drugs, diet, the whims of Fate, etc. -- you get relief from your symptoms but you still don't have a diagnosis. That's still a win. As an example, my "official diagnosis" is UCTD, which is the medical way of saying "Yeah it's definitely something but we won't know exactly what until it gets worse." But I have a great doctor, I'm on daily meds with minimal side effects, and although I have the occasional flare, we've mostly stopped the thing in its tracks for now (knock wood) and gotten me back to a point where I can chase my kid and go rock climbing and generally feel like a healthy human being 96% of the time. Part of me still wants a more concrete diagnosis, but at this point I'd have to get sicker to get it, so no thanks. All of which is to say that you may have to learn to live with some amount of limbo, but that's much easier to do once you are feeling like the mystery ailment is under control.

I wish you all the best on this journey. Hugs.
posted by somanyamys at 6:42 AM on August 16, 2017 [3 favorites]

Oh, have I been in your shoes.

I agree with keeping a log/ journal of symptoms; it's very important. Also, keep copies of your medical records: things happen to doctors (one of mine was in a skiing accident; another retired) and it's easier, if this ends up being a long term thing, to hold onto your records than to try to track down records from years past when they've been put into someone's offsite storage. Log your appointments and the names of the providers you see. In five years you'll thank past you for the thoughtfulness. Validate yourself and your experience. Many of us are so afraid of seeming hypochondriacal thay we minimize our symptoms. And your brain wants to forget the unpleasant bits. So you do need a record.

But after keeping your records: disconnect. While waiting for my diagnosis, I taught myself to sculpt in polymer clay (totally new for me) and played a lot of video games. I'm having an unrelated medical thing now, and I'm back to gaming. I'm a "mindfulness" person in general. Sometimes, though, giving yourself something totally different to wrap your brain around can be the break you need. It is okay to check out for a while, especially if you find a way to do it in a non-self-destructive way.

Sending you solidarity and confirmation that your experiences are very very normal for a person in medical limbo. I wish you all the very best.
posted by Nancy_LockIsLit_Palmer at 7:29 AM on August 16, 2017 [2 favorites]

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